Phantom Pain (Mini-Essay #5)
Ten things about lupus life and trauma recovery
This is part of a series about living with lupus and trauma recovery. I hope those of you with chronic illness or struggling with your mental health might feel less alone as you read these. This is also written for those who want to care, but need an insider’s perspective to help you develop compassion and empathy.
5. Phantom blood clot pain.
I loved getting off blood thinners. Bruises riddled my arm. More than once I had blood seeping onto my clothing or pillows after being pricked for an injection or a blood test. I wasn’t too scared about the blood clot travelling to my lungs, or brain—just too much to worry about on top of everything else. Even so, when the blood clot dissipated, it was still nice to not have that lingering risk to consider.
But not everything changed after my blood clot resolved. I would still feel pain behind my knee and up my inner thigh. I asked the vein surgeon about it and he said that deep vein thrombosis damages the veins, causing pain for months after it heals. However, it is getting close to a year since this was “resolved” and I still frequently feel the type of pain that was unique to having a blood clot. It hits me that maybe I should get it checked.
So far, though, I’ve only thought of it as psychological ghost pain. It reminds me of what I was when I was very sick, distinct details. And for some reason I like that reminder, it feels dear to me. Which concerns me. Why do I like that?
Recently, I delved into this with my therapist. An hour later, and crying, I felt I had gotten somewhere. If I forget the pain of suffering, or if I forget what happened, will what happened matter? Will it still have worth? Will my story be invalidated if I forget all the details?
And if the cost of forgetting pain means my story won’t matter, then my brain needs to keep the pain. Because I know the story matters.
Yes, I am talking about physical pain, caused by a blood clot, caused by some combo of pregnancy and lupus. But somewhere in there our suffering diverges and becomes a thing of the mind. In fact, can they ever be totally separated? As holistic people, with spirit, mind, soul, and body, I think not. We are intertwined.
Read the rest of this series:
Please Don't Simplify the Complexities (Mini-Essay #1)
Pharmacy (Mini-Essay #2)
PTSD Et Al. (Mini-Essay #3)
Not-So-Friendly Insomnia (Mini-Essay #4)
Phantom Pain (Mini-Essay #5)
Hello, Hair! (Mini-Essay #6)
Homebody (Mini-Essay #7)
The Scars (Mini-Essay #8)
Betrayal (Mini-Essay #9)
Grief for a Lost Year (Mini-Essay #10)
Here are other lupus/trauma related posts from the last year-and-a-half:House of Life, Washing Hands, Do Your Job Well, and the Lupus, Pregnancy, and Autoimmune Illness series posted at AverageAdvocate.com.
On Average Advocate this week: How Do You Honor a Story?
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